I found out I have epilepsy

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Joined: 3 Sep 2015
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29 Aug 2019, 1:48 pm

Hi
I just found out that I have epilepsy
They are related to autism, I think, because some of them are sensory seizures

What’s sad is that my EEG was abnormal when I wasn’t even feeling my worst during the time of recording

I started treatment last night and oh my goodness, it does help in several ways. I am very excited to continue treatment.

Anyone else a person with autism and epilepsy? What do you think about it ?

Mountain Goat
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29 Aug 2019, 1:51 pm

No idea. I have been asked by drs if I have it. I don't think I do. I have had my eyes suddenly and quickly go left right left rigjt left right etc on their own and very fast for about half a second or so. Had it on numourous occasions but not often. I mean... I don't get it for years, but then I may get it suddenly a few times in a week... and even more then once a day... And then not get it for another year or three... No idea what it is or what causes it. There is no way I can make my eyes do that by themselves! Not at that speed! Ha!

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29 Aug 2019, 2:45 pm

Mountain Goat wrote:

Hmm yes some can last few seconds, some minutes. Mine happen many many many times a day to the point where it’s hard to take Care of myself and do things.
As long as you’re good ! But wouldn’t hurt to mention it to your docs. It sounds good that they don’t happen for years apart.

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29 Aug 2019, 2:55 pm

Is what I describe epilepsy? I didn't know what it is. Never told a doctor. Is something I assumed they would laugh at me and say to go home and stop being silly!
I had to retype this as I don't want my eyes to fall out with lepracy. Is epilepsy... A bit different.

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29 Aug 2019, 2:59 pm

Mountain Goat wrote:

I am not sure as I am not a neurologist. But you should tell them even if it’s just to keep them informed. There are certain guidelines for diagnosing epilepsy. Also, I suggest trying to remember any patterns of possible triggers. They can do an EEG but those are usually 30min. If they don’t catch it, there is a take home EEG you do for 3 days to try to catch it. You can also do MRI to see if there is anything structurally going on.

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29 Aug 2019, 3:08 pm

love2connect wrote:

Mountain Goat wrote:

I don't think I could do an MRI. Is claustrophobic.

Is not an issue foe me if it is that as it happens less then a second and is fairly rare. When it does happen it will repeat once or twice in a day or a fww weeks, and then it goes. So finding what caused it is difficult. I never knew it has a cause. Was more of a case of "What was that?" sort of reaction... Haha.

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Arganger
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29 Aug 2019, 4:01 pm

Possibly. I'm not doing great physically and it is possible I may be having petit mal seizures

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Grammar Geek
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29 Aug 2019, 7:04 pm

Used to. Had my hippocampus removed when I was 18 so I’d stop having seizures and be able to drive.

love2connect
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29 Aug 2019, 9:12 pm

Arganger wrote:

Possibly. I'm not doing great physically and it is possible I may be having petit mal seizures

I'm so sorry, I hope for healing for you as soon as possible.

love2connect
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29 Aug 2019, 9:13 pm

Grammar Geek wrote:

Used to. Had my hippocampus removed when I was 18 so I’d stop having seizures and be able to drive.

Wow, no way.
How are you doing now?
I'm guessing mine are also related to the hippocampus, as I have some psychic partial seizures. Along with sensory seizures. Probably others I am not aware of yet.

My medication is making my empathy flare up, though. I'm fine now being outside but now I am depressed being inside the house.

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29 Aug 2019, 9:20 pm

love2connect wrote:

Grammar Geek wrote:

Used to. Had my hippocampus removed when I was 18 so I’d stop having seizures and be able to drive.

I’m doing just fine. That hippocampus never worked anyway, impairing my memory retrieval ability and making me struggle a lot in high school and college. I can drive now, but another problem I have with it is no sense of direction at all, so I need a GPS to get anywhere.

Noca
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30 Aug 2019, 9:50 pm

I had childhood epilepsy but grew out of it. Had 4 grand mal seizures between ages 4-6 and was put on Valproic acid, I think I went off it by age 8 and never had seizures again.

xxZeromancerlovexx
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30 Aug 2019, 10:03 pm

I have it but I take Lamictal and have been seizure free for years. My last one was in 2012 or something. I don’t really remember.

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Goob234
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31 Aug 2019, 11:52 am

I have always wondered if I have epilepsy. I get these frozen eye stare things that happen. They last a couple seconds. They happen a lot when I am overwhelmed or when I look at some patterns or even the slits in blinds sometimes.

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Joe90
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31 Aug 2019, 1:05 pm

I have heard of people with autism having seizures, especially sensory-related ones, but I've never had a seizure or fainted and I hope I never will.

Some autistic do go their whole lives without having a seizure, right?

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31 Aug 2019, 1:12 pm

I have episodes that are best described as Absence Seizures. They are exactly like the descriptions I've read. I had several EEG tests which found that I have too much slow wave activity in my temporal lobes. This was an atypical result which is very rare but the doctors weren't sure how to classify it. They chose not to call it Epilepsy because I would have to lose my drivers' licence. The findings were reconfirmed on my sleep study tests which also showed that my brain waves function very differently than the norm.

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